Patient involvement and support groups
Pregnancy and birth
- Action on Pre-eclampsia
Provides a confidential service open to anyone seeking information or support on pre-eclampsia
- Antenatal Results and Choices
National charity which provides non-directive support and information to expectant and bereaved parents throughout and after the antenatal screening and testing process
- Association for Improvements in the Maternity Services (AIMS)
Emotional support and encouragement as well as information about choices and rights
- The Birth Trauma Association
Offers emotional and practical support to women who have had a traumatic birth experience and also to their families
- The British Liver Trust
The British Liver Trust is the national charity working to reduce the impact of liver disease in the UK through support , information and research
- BUMPS
Information leaflets providing women and their partners with the facts they need to make informed decisions, in conjunction with their healthcare provider, about use of a medicine(s) in pregnancy.
- Diabetes UK
The leading UK charity that cares for, connects with and campaigns on behalf of people living with diabetes
- Early Pregnancy Information Centre
Has rounded up the most common early pregnancy issues and worries so that you can find what you need
- Ectopic Pregnancy Foundation
The aim of improving the care of women with a diagnosis, or possible diagnosis, of ectopic pregnancy
- Ectopic Pregnancy Trust
Providing information, education and support to those affected and to the health professionals who care for them
- Fetal Alcohol Syndrome Aware UK
Aims to raise awareness, give informed choice, provide information and support for people affected by/interested in FAS
- Hydatidiform Mole and Choriocarcinoma UK Information and Support Service
Information on molar pregnancies and gestational trophoblast disease
- Herpes Viruses Association
Helps people who have genital herpes simplex to help themselves
- ICP Support
For anyone affected by intrahepatic cholestasis of pregnancy
- LabourPains
Providing evidence based information on the benefits and complications of epidurals in labour and other forms of pain relief and about choices of anaesthesia for caesarean section
- Mind
Information about postnatal depression, including self-help, treatment and sources of support
- Molar Pregnancy Support
Offering support and information to those who have concerns or questions about a molar pregnancy
- Mummy’s Star
Supporting pregnancy through cancer and beyond
- National Childbirth Trust (NCT)
Information and support in pregnancy, childbirth and early parenthood
- National Organisation on Fetal Alcohol Syndrome
NOFAS-UK is committed to helping individuals with fetal alcohol spectrum disorder (FASD), their families and carers
- PANDAS Foundation
UK charity supporting familes suffering from pre- (antenatal) and postnatal illnesses
- Positive about Down syndrome (PADS)
A website created by parents for parents, to ensure new & expectant parents can access and understand the lived experience of Down syndrome. Literature is available for maternity units to promote and distribute to expectant and new parents.
- Positive Birth Movement
Connecting pregnant women via free antenatal groups to share stories, expertise and positivity about childbirth
Family planning
Coping with losing a baby
- Antenatal Results and Choices
National charity which provides non-directive support and information to expectant and bereaved parents throughout and after the antenatal screening and testing process
- Child Bereavement UK
Providing confidential support, information and guidance when a baby or child of any age dies including through stillbirth or miscarriage
- Ectopic Pregnancy Foundation
The aim of improving the care of women with a diagnosis, or possible diagnosis, of ectopic pregnancy
- Ectopic Pregnancy Trust
Providing information, education and support to those affected and to the health professionals who care for them
- Miscarriage Association
Support and information for those suffering the effects of pregnancy loss
- Sands: the stillbirth and neonatal death charity
Support for parents and families whose babies are stillborn or dies soon after birth
- Tommy’s
Funding research and providing information on the causes and prevention of miscarriage, premature birth and stillbirth.
Gynaecology and the menopause
Please visit our new menopause hub, which brings together a range of information sources about key topics around menopause and women's health in later life.
- Bladder and Bowel Foundation
Provides information, help and support for adults aged 18 years and over, who have experienced either a bladder or bowel problem or both
- Cystitis and Overactive Bladder Foundation
Giving support to people with all forms of cystitis, overactive bladder and continence issues together with their families and friends
- Daisy Network
Support for women who have experienced premature menopause
- Hysterectomy Association
Being informed about hysterectomy and the alternatives can help you make a better, and more informed choice about your own health in the future
- IBS Network
Supports people living with irritable bowel syndrome
- Jo’s Cervical Cancer Trust
The UK’s only cervical cancer charity dedicated to women, their families and friends affected by cervical abnormalities and cervical cancer
- Menopause Matters
An independent website providing up-to-date, accurate information about the menopause, menopausal symptoms and treatment options
- MRKH Connect
Aims to connect women with Mayer-Rokitansky-Kuster-Hauser Syndrome worldwide through providing an online support system. They allow members to receive and offer support to other women in similar situations.
- National Association for Premenstrual Syndrome
Providing support for all women and their families who are affected by PMS and related menstrual health problems
- Target Ovarian Cancer
Provides advice and support for women with ovarian cancer via their website, publications and a free-to-attend programme of events and courses
- Pelvic Pain Support Network
Supports patients with pelvic pain whether they have a diagnosed condition or not
- Womb Cancer Support UK
Offers online support, information and advice to women going through womb cancer via their website and their Facebook page
- Women’s Health Concern
Provides an independent service to advise, reassure and educate women of all ages about their health, wellbeing and lifestyle concerns
Genetic conditions and disability
- Contact a Family
UK-wide charity providing advice, information and support to the parents of all disabled children
- Down’s Syndrome Association
Helping people with Down syndrome to live full and rewarding lives
- Disability, Pregnancy & Parenthood
A small England-based charity promoting better awareness and support for disabled people during pregnancy and as parents
- Genetic Alliance UK
The national charity of patient organisations with a membership of over 130 charities supporting all those affected by genetic disorders
- Sickle Cell Society
The Sickle Cell Society believes that every sickle cell sufferer has the right to quality care
- SOFT UK
SOFT UK helps those affected by trisomy 13, trisomy 18 (Patau’s and Edwards’ syndrome) and related disorders
- Patients Association
Information on a wide variety of issues, ranging from finding local support groups for certain medical conditions, NHS services and support groups to providing information on what patients are entitled to, making a complaint and listening to patients’ experiences
- Positive about Down Syndrome
A website created by parents for parents, to ensure new & expectant parents can access and understand the lived experience of Down syndrome. Literature is available for maternity units to promote and distribute to expectant and new parents.
- UK Thalassaemia Society
The UK Thalassaemia Society has been in existence for 30 years and has amassed a wealth of experience in thalassaemia
Fertility
- Endometriosis SHE Trust
Offers help, information and support to women with endometriosis and everyone else interested
- Endometriosis UK
A charity committed to providing much-needed support and information for anyone affected by the endometriosis
- Fertility Network UK
Fertility Network UK is the UK’s leading fertility support network, offering information and support to anyone affected by fertility problems
Other
- Association of Anaesthetists
Anaesthesia and anaesthetists: information for patients and their relatives
- Group B Strep Support
Offers information and support to families affected by group B streptococcus
- HealthTalkOnline
HealthTalkOnline lets you share in more than 2000 people’s experiences of health and illness
- Macmillan Cancer Support
Macmillan Cancer Support improves the lives of people affected by cancer
- NAM
The HIV information charity, provides information on living well with HIV, including how HIV-positive people can have a health, HIV-negative baby
- Patients Association
Information on a wide variety of issues, ranging from finding local support groups, NHS services, provides information on what patients are entitled to, making a complaint and listenig to patients’ experiences
- Patient.co.uk
Details of 1848 UK patient support organisations, self help groups, health and disease information providers
- Positively UK
A national charity championing the rights of people living with HIV
- Royal College of Radiologists
Find out what to expect when you visit the hospital for diagnosis or treatment, including equipment and people you are likely to meet
- Terrence Higgins Trust
The Terrence Higgins Trust is the leading and largest HIV and sexual health charity in the UK
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NHS information
- Department of Health
Latest news and information as well as access to publications, policy and guidance
- National Electronic Library for Health
Digital library for NHS staff, patients and the public
- NHS Choices
NHS Choices is the online ‘front door’ to the NHS, and is the country’s biggest health website and gives all the information you need to make choices about your health
- NHS Information Service for Parents
The NHS Information Service for Parents is a new digital service that women and their partners can sign up to. Once signed up, they will receive regular free emails and text messages offering high-quality NHS-accredited advice and information covering a range of topics plus links to other sources of help and advice
- NHS Improving Quality: A review of support available for loss in early and late pregnancy
This review:
- Scopes what support exists for women and families across England who experience loss at less than 24 weeks of gestation
- Scopes what support exists for women and families across England who experience loss greater than 24 weeks of gestation
- Scopes what support exists for stillbirth, pre- and post-delivery, identifies the key charities and determines what they offer
- Identifies areas of good practice, soft intelligence and stories from women with experience of loss
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Regulation and safety
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